• over 1 year ago

    At our wits end...

    Our 22-year-old daughter has had Type 1 diabetes since she was three years old. Over the past eight weeks, she has been hospitalized seven times, sometimes in ICU. A few of those times, she was in DKA...one time, it was almost fatal. Her symptoms always start with intense, uncontrollable vomiting. The doctors' diagnosis is always "diabetes mismanagement." But her A1C is always good. She has had to drop out of school and move back home, where we have been monitoring her diet, sugar levels and insulin, and all are in compliance. Still, the cycle continues. The hospital stabilizes her, sends her home with the same instructions, then within a matter of days, we have to take her back to the ER. She has been diagnosed with mild gastroperesis, told to eat six small meals during the day rather then three large ones, and was prescribed Reglan...all to no avail. As I write this, I am preparing to take her to the ER again. Advice from anyone who has experienced this uncontrollable cycle would be greatly appreciated.

Responses

  • over 1 year ago

    RE: At our wits end...

    Posters on message boards and forums are prohibited from dispensing anything that constitutes “medical advice” so do not misconstrue my commentary to be anything but personal opinion. It is based on my own experiences with diabetes as well as personal observations on the struggles of many, many others who have “struggled” with managing the condition.

    First and foremost, you would probably get more replies to your post if you would simply create a user ID that we can address you by instead of using “Anonymous.” A user ID will add a personal touch to your posts without necessarily exposing your true identity (unless you choose to use your real name), nor your address, or any other personal information.

    I used to be a frequent poster on WebMD’s diabetes forum (now renamed a “Message Board”) but had pretty much abandoned it (as well as other online forums) in favor of helping folks on a more personal, local basis. But not always successfully, I might add. In the past two years, three of our local diabetes support group members have died (two of diabetic-related complications) and one had to have the toes on both feet amputated despite my (and other’s) best efforts to get him to “normalize” his blood sugars.
    This could be the problem in your own situation. Your daughter’s many symptoms do suggest that she has out-of-control blood sugars. If she has been hospitalized seven times in eight weeks, clearly something is out of balance. In diabetics, gastroparesis is most often caused by neuropathy (nerve damage) of the vagus nerve. Neuropathy is a frequent and all too common complication associated with elevated blood sugars. That means people who have blood sugars that are “above normal.”

    You also state that after the hospital stabilizes her, she is sent home and “within a matter of days,” the cycle repeats. That begs the question: why hasn’t anyone bothered to teach her how to “stabilize” herself? Why hasn’t she learned it on her own? That’s not meant to be critical; only to emphasize that managing diabetes successfully has always been 95% patient and only 5% doctor. The process is much, much easier than you or your daughter might think and perhaps we can go into aspects of this in a future post.

    You seem puzzled that your daughter is suffering from all of her symptoms but her “A1c is always good.” You also state that you have been “monitoring her diet, sugar levels, and insulin, and all are in compliance.” Unfortunately, “in compliance” begs the questions, in compliance with what? The terms “normal” and “in compliance” is similar to the Food Industry’s use of “all natural,” “healthy,” and similar misleading terminology. The ADA guidelines for diet, blood sugar levels, and A1c levels are toxic for many of us. By using our BG meters and “eating-to-our-meters,” we have learned how to find out what works for us individually since we are all unique.

    I should note that a “good” A1c is possible even with uncontrolled diabetes. That’s because the A1c is only an average of blood sugar bonding to RBCs that includes ALL glycated hemoglobin during periods of both high and low blood sugars. If your daughter is undergoing roller-coaster blood sugars that bottom out in the twenties or even lower (e.g., the DKA she experienced), then spiking up into the high 300’s, 400’s, or even higher, after a meal, the overall average might appear to be “good” or “near-normal” but she may suffer severe damage during her highs (and risking her very life when it drops too low). Here are just a few of the many questions that spring to mind:
    1. Has your daughter adopted a low-carb diet (either LCHF or LCHP)?
    2. Does she test her blood sugar level before meals and two hours after? If so, what are her average results? (note: I did not ask whether they were “compliant”).
    3. Does she test her blood sugar at bedtime? If it is high, does she take a corrective dose of insulin before going to bed?
    4. Does her meal plans include the concept, “Eat-to-your-meter”?
    5. Does your daughter have a “target zone” for blood sugar levels before and after meals, at bedtime, and on arising (and how often does she meet her target)? Are those targets greater than two digits?
    6. Is your daughter on the obsolete “sliding scale” dosage chart for the insulin that she injects or is she on a FIT (Flexible Insulin Therapy) plan?
    7. Does your daughter use a CGM and/or insulin pump?

    Your daughter’s situation seems like it would be greatly helped by improved education. As diabetics, we are all different. There is no “one size fits all.” It is essential for all PWDs to learn how things (food, exercise, and insulin) affect each of us individually. Then take appropriate action to keep everything in balance. It is not as difficult as it might sound.

    I have been insulin-dependent myself for over fifteen years. Prior to starting insulin, I had pretty severe neuropathy and foot drop syndrome. After normalizing my blood sugars (and that’s “true normal”; not the organ-damaging levels recommended by the ADA and many health professionals). My neuropathy began to fade within three months and reversed after about six. It took nearly two years, however, for a more complete recovery. My average A1c over the past fifteen years has varied between 4.8 on the low end and 5.4 on the high end. My target for both bedtime and fasting blood sugar levels is under 90 mg/dL and I am successful in reaching it the majority of the time.

    One of the fastest-growing and largest diabetes support groups on Facebook for T1s is Type1Grit. Members there credit their remarkable “normal” results on the “Dr. B protocols”. “Dr. B” is Dr. Richard K. Bernstein who laid out his guidelines or normalizing blood sugars in in his book, “Dr. Bernstein's Diabetes Solution: The Complete Guide to Achieving Normal Blood Sugars.” You can read portions of the 2007 edition of his book online for free at diabetes-book.com (at the home page, just click on the menu tab, [Read Online]). Be sure to read his life story as well as the chapters on Food, Gastroparesis, and Chapter 7: The Law of Small Numbers.

    Anonymous, if you read this post and would like to continue a dialogue, please post back. I have not frequented these message boards for quite a while but will check back periodically over the next two weeks to see if you have replied (don’t expect too prompt a response, however). I am confident that if your daughter familiarizes herself about the “Dr. B Protocols” and learns how to successfully apply them to her own situation, she can join the growing number of diabetics worldwide who have tamed their diabetes to live virtually normal lives. Better still, go to the Type1Grit board on Facebook and be pleasantly surprised to see how many T1s are managing their diabetes successfully.
      • over 1 year ago
        Thank you so much for taking the time to prepare such an in-depth response. Checking out Type1Grit right now!
      • over 1 year ago
        Glad you finally got a "thank you" for this extraordinary post, nutri, and welcome back!
  • over 1 year ago

    RE: At our wits end...

    Anon,
    Your post drew me out of my self-imposed forum posting retirement because I could “feel” the pain, frustration and anguish you projected. The path that your daughter was on seemed to even threaten her ability to celebrate her 23rd birthday. By that, I don’t mean to just live through that date but to actually celebrate and enjoy it; something that’s possible only with good health. Here are some initial suggestions:

    1. One of the first things that both you and she needs to do is to discard any guilt or self-blame in her situation and, instead, embrace a “CAN DO THIS” spirit. It isn’t magic, it isn’t even very difficult (challenging, yes, but not difficult). You only need to clear your mind, recognize that what she has been doing is clearly not working for her, and be willing to embark on a new path, a new direction.

    2. If you/she aren’t already doing so, start keeping a journal, log or diary of her dietary consumption, insulin dosages together with a detailed, running record of her blood sugar levels. Don’t just write everything down. Go back and review and analyze the data on a daily basis. Try to see if you can spot any trends, correlations, and/or associations because therein lies your solutions. The use of a CGM (Continuous Glucose Monitor) would be of tremendous help but due to their expense, is not an absolute necessity. Many, many thousands of us have never used a CGM (including me); yet we are able to achieve near-normal (non-diabetic) blood sugars.

    3. Learn all that you can, but at a pace that does not overwhelm your capacity to absorb and comprehend the information. Be absolutely certain that your education comes from reliable, proven sources based on positive results from the readers and not just testimonials that are merely promotional propaganda. Avoid books with glib promises such as those that claim their particular “secrets” will “reverse” your diabetes. For example, far too many of the authors who advocate that merely adopting a plant-based diet will result in a miraculous improvement are guilty of this false promise. Here are my personal recommendations:
    Dr. Bernstein's Diabetes Solution - Richard K. Bernstein
    Think Like A Pancreas - Gary Scheiner
    Blood Sugar 101, 2nd Edition - Jenny Ruhl

    4. There are three groups of macronutrients: carbohydrates, fats and protein. Of the three, carbohydrates have the single greatest impact on blood sugars. Even the ADA and virtually all doctors and dietitians acknowledge this fact. Yet most continue to tell patients that they “need” to consume carbs to function; that it is essential to eat at least 40 Gms per meal or more! That is an absolutely false statement and holds no truth whatsoever. You may already know this or have seen this in many of the postings on Type1Grit. Even young kids know that carbs and processed foods are damaging to T1s. Has any member of your daughter’s healthcare team recommended a low-carb or paleo-based diet to your daughter?

    If you haven’t yet done so, be sure to watch this presentation by R. David Dikeman on the DietDoctor website:
    https://www.dietdoctor.com/member/presentations/dikeman

    Protein will also convert into glucose through a process known as gluconeogenesis but it is a slow process and most T2’s can secrete sufficient insulin to keep pace. However, most T1’s need to use insulin to offset the protein conversion and very often, a slower form of bolus insulin may work better (e.g., Regular-R). I personally only use the faster acting insulins (Humalog, Novolog, Apidra) to correct highs but my mainstay insulin is R (Humalin-R or Novolin-R). One significant word of caution: When reducing carb consumption or changing insulin types, it is essential to talk with her doctor. If he/she is not receptive but cannot provide an acceptable explanation, then you may need to seek guidance elsewhere. However, don’t go on your own.

    Comment: I personally DID start using insulin on my own but my mother was diabetic and taught me more about diabetes, dietary impacts, and insulin dosing than anything I ever learned in pharmacy school (I earned a doctorate in Pharmacy at USC). Although I started dosing with insulin on my own, I did do due diligence research before doing so. However, this is NOT something that would be safe nor recommended for most people.

    5. Consider the wise advice of people at the Behavioral Diabetes Institute: maintain the best blood sugar control you can, avoid lows (hypoglycemia) especially severe lows, and live your life. Don’t place any credibility on the constant claims that a cure for Type 1 diabetes is “just around the corner.” Don’t use your meter to shoot for perfection. Simply establish goals (target range for acceptable blood sugar levels) and then try to attain them. This should not be a static number but dynamic, subject to ongoing change and improvement. Don’t beat yourself up if you fall short; just evaluate the data and try to do better next time.

    6) TEST, TEST, TEST! Frequent blood glucose testing normally results in better control. Don’t allow embarrassment to prevent you from testing or injecting in public if you are not using an insulin pump. Insulin dosing is essential to maintaining and preserving your health so just do it. You should try to be discreet when possible, of course, but at other times, you can use the privacy of your car or a nook or cranny in a building. I have even used a restroom occasionally but usually choose not to due to the unclean environment of most public restrooms.

    7. Eat to your meter - use your blood glucose meter to test your blood sugar after meals. Journal everything and gradually eliminate from your diet those foods that spike your blood sugar. Follow “the rule of small numbers,” Dr. Richard K. Bernstein’s principle of “big inputs make big mistakes; small inputs make small mistakes.” Simply put, lower carb intake means lower doses of insulin are required and smaller doses mean smaller “mistakes” (dosage errors) will be made. Do NOT try to consume large amounts of carbohydrates and then try to offset their effect by injecting large doses of insulin, regardless of what the A.D.A., diabetes “educator,” or dietitian often keeps telling PWDs. Food and insulin both have activity curves that are different from one another. Trying to match the two action curves to prevent spikes and blood sugar hypos is virtually impossible. Roller coaster blood sugars do long term damage to the internal organs of any diabetic resulting in many complications. Avoid this disaster at all costs.

    8. Re-evaluate the capabilities of your daughter’s existing healthcare team. Based on your own post, there may be some serious shortcomings in the care and advice they are providing to her. It may very well not be a case of your daughter just being “non-compliant” or “mismanaging” her diabetes but could suggest a change in one or more members of her health care team. Make your evaluation and analysis as objective as possible. Seek a second or outside opinion if necessary. However, the bottom line is that each of us is responsible for 90% to 95% of our diabetes management and we can’t afford to pass the buck. One of the most challenging factors in controlling blood sugars is your daughter's gastroparesis. How advanced or serious is her gastro?

    These suggestions are just a bare beginning but will provide you and your daughter with ample food for critical and objective thought. I’m sure that some of them are redundant and that you are already following them. However, your daughter’s declining results indicate that she may be frustrated, perhaps even depressed, and may no longer be evaluating her procedures objectively. In my youth, the hippies had a favorite saying:
    “Today is the first day of the rest of your life.” Then Dr. Albert Einstein was attributed with coming out with a series of quotes, two of which have been my personal favorites:
    “You never fail until you stop trying” and “Insanity is doing the same thing over and over again and expecting different results.”

    Side note to Brunosbud: glad to see a name that I recognize. I personally don’t like the new message board format. There is no provision for embedding hyperlinks without posting the entire string for the link. There is also no means to post (embed) photos, charts, and graphs. The old WebMD forums did support these features and I miss the ability to be able to include charts and graphs. I did make significant improvements to the visual appearance of my original A1c conversion chart. The values were extracted from the ADA website, circa 2003. However, the column headings and color gradients are my personal interpretation those values. You can find it here:
    http://photobucket.com/gallery/user/NutriJoy/media/bWVkaWFJZDoxMzMxMDMxMDQ=/?ref=1
  • 3 months ago

    RE: At our wits end...

    Anon,
    Your post drew me out of my self-imposed forum posting retirement because I could “feel” the pain, frustration and anguish you projected. The path that your daughter was on seemed to even threaten her ability to celebrate her 23rd birthday. By that, I don’t mean to just live through that date but to actually celebrate and enjoy it; something that’s possible only with good health
    https://www.nutritionsdiet.com/